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high risk mds

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This topic contains 7 replies, has 1 voice, and was last updated by  KATHY1 14 years, 5 months ago.

Viewing 8 posts - 1 through 8 (of 8 total)
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  • #2681

    BigVader
    Member

    I’m 26 years old and have been diagnosed with high risk MDS. I’m being treated at a center of excellence in st. louis. My doctor does not have me on any of the drugs that most of you are on. i am on a new trial drug that may help me from progresing to leukemia but that is all. I’m wondering why? last week my counts were HMG 7.0
    WBC 2.8 PLTS 78,000. the HMG was so low because i had only had 1 unit of blood in the last 2 months. my HMG has been as low as 5 when they first diagnosed me. WBC and PLTS have been steady for about 3 months now. The only thing doc will talk about is a SCT. he says i’m so young he wants to cure me and not just treat the symptoms. they said they have 7 potentially perfect matches for me. he wants to do the SCT as soon as possible. they say at my age i should go through this as easy as anyone can. Anyone know of younger people who have had this done and how they are doing?

    my blasts are really high (18%) i guess i’m pretty close to leukemia. i have read acute leukemia can usually be put into first remission if caught early enough. they tell me they caught it plenty early so would i have a good chance of remission and getting the SCT?

    Thanks for reading.

    #2682

    Terri
    Member

    Big, Your Age is definately a Plus, There are other members who I believe have gone through the SCT and will probably respond. I wish you well and add you to my prayers.

    #2683

    Neil
    Member

    Get all of the info you can from the docs who want toperform the SCT.
    How many have they done? How many successfully?
    How many done on patients your age? Successfully?
    How many done on pts with your class of MDS? Successfully?
    Then check centers like M D Anderson, Fred Hutchinson and the NIH to compare stats.
    There has been some great progress made with SCTs over the past year. You want the very best team possible doing the procedure.
    You don’t want docs looking for patients to try their procedures on. This is not to say they are, just to make you aware and to be alert.
    Your age is a huge asset and you do not want the disease to begin to get a foothold. Also consider the fewer number of tx you have going into a SCT the better.
    Good luck and keep us posted. You will be in our thoughts and prayers.
    Neil

    #2684

    B. Greene
    Member

    Your age is most certainly in your favor. I can only offer my own personal opinion after going through thelast couple of years of chemo trying to stave off the AML much less the MDS. Knowing how difficult this has been and after all of it still having the disease I personally wouldn’t hesitate having the transplant if I had a good match and good team. I don’t see how it could be any harder and you have the chance of actually being cured. I would however want to have the very best team doing it. BUT this is something only you can decide. As usual Neil has offered great advice. I am curious as to what drug you are on and if you are at Barnes. Our very best wishes to you. R

    #2685

    BigVader
    Member

    Yes, I am being treated at Barnes in st louis. i have been told by many people that this is the place to be if you need a SCT in this part of the country. I couldn’t tell you the name of the drug. I am only the 9th person to take this drug and it is still labeled by only a number. if you know any bad things or good things about barnes don’t be shy about passing it on.

    #2686

    Suzanne
    Member

    congratulations having a lot of pluses on your side. As everyone says your age makes a transplant less of a risk and having so many potential matches is wonderful. Ask questions, Collect all the information you can and make the decision that feels right to you. Then go for it!I hope you have some family support to help you through whatever process you decide to follow.It really helps to have someone else along on appointments and treatments to listen and ask questions you might not think of.Keep in touch with developments. We will all be cheering you on and wishing for an easy road to a cure so you can enjoy a wonderful long life! Suzanne

    #2687

    shirlsgirl
    Member

    Hi BigVader,

    I wish you well!! I’ll definately be cheering you on! Jody

    #2688

    KATHY1
    Member

    Big Vader, Sorry you have to go throughall this. Hope all goes well. Kathy

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